TRIPLE POSITIVE GROUP

MACTAZ

Thanks SpecialK

PhoenixCruiser

rljes, my lashes fell out four times - very frustrating. This time they have lasted longer than before so I'm hopeful. My last Taxol was the end of February.

Ingerp, that really sucks about your leg hair. Mine fell out but it was the first to came back.

SpecialK, your eyebrows look great!

I use Benefit's Gimme Brow and mine look better than ever

Paloma1211

anyone think it’s worth trying one of the lash/brow growing serums while still doing chemo? I have 2 more treatments left, and still have lashes and brows. No much hair anywhere else, but at least I have that

MACTAZ

paloma1211, I had to be the bearer of bad news but I had my eyebrows and eyelashes until 2 to 3 weeks after chemo. I didn’t try any of the creams, I’ve just never had luck with those types of products. I will say I’m now 4 1/2 months past chemo and have got good growth back. Whatever you decide, good luck

Brandicam

I was diagnosed triple positive at the end of January this year. Started tchp March 7th. Going for my 4th infusion this Wednesday. After my first infusion, I could feel my tumor shrinking and it got super soft. After the second there was a little change. after my third I have not noticed any change whatsoever and the size still the same. I am afraid it has stopped working. I remember when I first started treatment my MO said that I should respond well and even see my lump dissolve... Well it is far from being dissolved. Were your tumors still palpable at the end of treatment? Did you get a good response?

DawnS1962

Brandicam I had 4 rounds of AC and am now on THP. I was told I should be able to see the tumor disappear. I had a small indentation to the right of my nipple. If anything, as treatment continued, it just looked worse. I had an ultrasound after completing AC and the tumor has shrunk 50%. My breast surgeon said it could be the softening that is causing it to look worse or even the way the tumor is breaking down. I'm just happy for any positive results.

Paloma1211

No worries, MACTAZ. I figured they were going to go eventually. Just thinking if I should spend the money now or later on the serum. I guess I’ll try now, be my own experiment..

Ingerp

Paloma--I don't think a serum could hurt and might help as they re-grow. What I experienced (and MO confirmed) is that by the time they come out, you'll already have baby hairs growing in behind them. It's like they push the old ones out, and it can't hurt to have the new ones in good condition. A tube of that stuff seems to last a long time, so if you want, go ahead and start it.

DawnS1962

Ingerp Did you lose your taste on chemo? My last labs showed low protein but it's hard eating without taste

ElaineTherese

DawnS1962,

My taste was definitely messed up by Taxol. I focused on eating bland proteins like scrambled eggs and chicken. It all depends on what you can tolerate. I did end up losing 10 pounds during Taxol.

Ingerp

Dawn things definitely tasted different, but I actually gained weight. :-( One of the few things that tasted normal was sweets, and I developed a pretty big ice cream craving (which has never been a particular weakness of mine--go figure). Beef-wise, my husband buys a big beef tenderloin at Costco, cuts it up, and sticks it in the freezer. We had petite fillets several nights a week. :-) I also made a lot of meatloaf--easy consistency and still tasted pretty good. In fact, I'm doing meatloaf now before my Herceptins. And the protein shakes I was drinking were those probably-not-all-that-good-for-you-but-still-yummy Odwallas or Bolthouse Farms. I'd always get the high-protein versions (yes--often chocolate).

AngelsGal57

Hi my triple positive gal pals!

I have been absent for a while trying to work through the NO treatment + Aromasin se's while working full time. So far still alot of fatigue 5 months out and a lot of muscle and joint pain but it is manageable. I see my Oncologist this week for the first time since January and the blood work shows most everything is normal except MCV (Mean Corpuscular Volume) is low and my red blood cell count is elevated. I am sure I will hear what that is all about on Thursday.

Thanks for always being here and for the updates on all of you. We are in this battle together rain or shine!

AngelsGal57

Dalismom

Hi

My first post..I'm triple positive stage 1a had double mastectomy since my Mom died of bc. I tried the Kadcyla and immediately lost my taste. I finished the Taxotere March 1 was just starting to get taste back and the worse taste ever from this Kadcyla. I'm tired, additional neuropathy no appetite and its been 17 days since my treatment. I'm considering going back on herceptin instead. Anyone else lose their taste on Kadcyla? I can handle anything but this taste thing just does me in.

rljes

Hi Dalismom - I'm so sorry to hear of your Side Effects and your mother passing,  glad you found our site. A lot of great advise, questions and support is here.  I can't help you with your question, I never tried Kadcyla, but wanted to welcome you to the group.  Hope you get your answers soon. You might look at other "topics" and see if there is one specific to Kadcyla.  Take care,

Dalismom

thank you for the welcome! I will try searching for a post using the name.

Cascadians

Hi Dalismom. Have had 3 Kadcyla infusions. Neuropathy now unbearably painful. No change in taste. Incessant pain and aching in leg muscles, bones, joints. Feet completely gone and hands more painful by the day. Supposed to have 14 Kadcyla treatments, wondering how I can possibly go further, in so much pain cannot get comfortable or relax. Although it has not affected taste, have no appetite but that happened before Kadcyla.

Started Letrozole May 1st and already have weird side effects. Nasty pill that raises cholesterol, blood pressure, blood sugar, clots, makes you gain weight etc -- everything bad. But with a tumor 98% estrogen positive one has to knock out that estrogen.

So tempted to stop all this that is destroying me but then the cancer will go berserk. This is hell.

Dalismom

Hi Cascadians,

I am so sorry to hear about you're neuropathy getting worse. Mine did for about 10 days and then went back to the taxatere level. I had some leg cramps and it raised my blood pressure also with nasty headaches. The doctor did say some people can't tolerate it.

I have a 2nd opinion at HUP next Monday to see if I go back to just the herceptin how less a prognosis would I have. I had to stop the carboplatin at 3 cycles since it affected my hearing, I am also concerned about stopping but there is no way I can work. I've been off 6 months now and had planned to return this week but I couldn't.

I'm supposed to start a hormone inhibitor also, will not be pleasant I'm sure. I had my mastectomy 4/5 and still have all my drains. Most likely the kadcyla caused the delay in healing.

Gotta hang in there, but it sure is hard.

Tx

AngelsGal57

Just read an encouraging article about Kadcyla. It has been approved for additional uses in Her2 positive patients.

https://www.biospace.com/article/genentech-s-kadcyla-wins-second-fda-approval-for-her2-positive-breast-cancer/?TrackID=21

I was on Kadcyla from July 2018 to Feb 2019. and it pushed me into complete remission. It is another breakthrough for Her2 treatment from Genentech!

Angelsgal57

AngelsGal57

Dalismom;

I have been on a Hormone inhibitor Aromasin and it seems much more tolerable than the Tamoxifin in the area of SE's. I do have neuropathy in my hands/fingers and shoulder pain from past injuries that flare up due to muscle pain, and fatigue but it is managible with Arthritis strength tylenol. I finished Kadcyla 4 months ago and recent blood work is normal.

I actually feel like I have gotten my life back some what. I have started doing more and fighting through the fatigue. I am excited to be going on my first real vacation that has nothing to do with treatment or SE's from Treatment. Taking an RV to Arkansas from California. 10 days of relaxation. Hope to get some watercolor painting done.

AngelsGal

KasiaK

Hello there,

Does anybody know if there are any interactions between herb called ashwagandha and hormone positive breast cancer? Is it safe to take it? I`d appreeciate any information.

GrandmaV

Kasia - Memorial Sloan Kettering Cancer Center has this information about it:  

https://www.mskcc.org/cancer-care/integrative-medicine/herbs/ashwagandha#msk_consumer     

MACTAZ

grandmav, great site and they also have an app “about herbs". I am always researching supplements and herbs for interactions and SE, this is great

DawnS1962

My daughter is graduating college on Saturday. When I was diagnosed I was afraid I would miss it because of fatigue caused by chemo but I'm feeling good and looking forward to it.

Chemo has left me pretty pale. I've got the whole pasty look going on. My RBC is low so I'm slightly anemic. I really want to look healthy on Saturday and found an incredible self tanner on Amazon. It's all natural and organic. My husband said it looks natural. It leaves my skin feeling really good too.

I had to share

Self Tanner with Organic & Natural Ingredients, Tanning Lotion, Sunless Tanning Lotion for Flawless Darker Bronzer Skin, Self Tanning Lotion - Self Tanners Best Sellers, Fake Tan https://www.amazon.com/dp/B00L2PB3BW/ref=cm_sw_r_cp_apa_i_hLc1CbXS266CA

KasiaK

Thank you GrandmaV.

nanette7fl

AngelsGal I started Kadcyla 3 weeks ago and I like it better than Herceptin alone. My MO doesn't understand what I'm trying to tell him because he replied "It's still Herceptin." But I think when they add the chemo to the Herceptin it changed it some. I feel kind of off the 1st week and the next 2 weeks were fine on round 1. Today was a very sleepy feeling day, but I am starting a container garden so that kept me busy. I'm fighting to stay on Kadcyla but MO is worried about my neuropathy and wants to switch me over to Herceptin/Perjeta because I'm the 1st BC patient in NE Florida who is on it.

I'm so glad it worked for you and I'm praying for the same results. Wishing I could do months of this before Rads but they're all afraid that if I wait too long my IDC might just raise it's ugly head. So, Rads will start soon and I'm going to push staying on this miracle drug!

rajae

Hi everyone. Excellent forum, always go back to this community when i find myself "abused" and depressed from reading google articles. i was diagnosed feb 20 2019 with 2cm IDC HER2 + ER+ (90%) PR + (50%) KI67 80%. Clean Pet scan and cerebral MRI. i am 62 years old.

Neoadjuvant chemo Taxotere (docetaxal) + herceptin + pergeta x 6 at 21 days cycle. first chemo was done march 26 2019 after having to lose 2 weeks healing due to an accident where the surgeon who had to put my cath punctured my lung and had to drain the air for a week at the clinic.

my question would be : if i dont achieve a pCR whats usually next? I know that i will automatically have 1 year of herceptin radiotherapy and some pills that are estrogen blockers. is there a chance my onc says we need further chemo? like FEC? .... FEC scares the heck out of me ... ive heard its nothing like the regiment im having ....

If no pCR is achieved ... does that automatically put us the triple positive in more danger .

also my KI-67 is 80%... this is stressing me out...

hapa

rajae - pretty much all Her2 positives have high Ki67. If you do not get a PCR, that does not always mean radiation. But your MO may recommend you do a year of Kadcyla instead of Herceptin, may keep you on Herceptin and Perjeta for the year, and/or may recommend Nerlynx when you are finished with the year. I did not get a PCR. My MO kept me on just Herceptin for the remainder of the year, and I will be starting Nerlynx any day now. I had radiation because I was under 45, had multiple tumors, and had three positive nodes after chemo. My MO also put me on ovarian suppression and aromatase inhibitors after radiation finished. Good luck with your treatment.

rajae

Hapa Thank you so much for the clarification about the high Ki and treatments . wish you the best of luck with nerlynx . let us know how it goes with your treatment.

LTWJ

rajae I had the same chemo and Breast mri and sonagram said pcr but the lumpectomy had no clear margins and cancer present. I never had any nodes involved so I just had a BMX and no radiation. Had a year of herceptin, only perjeta during the original 6 chemos because of such hard effects from it. Now taking anastrozole for 10 years and just had a hysterectomy. No other meds have been suggeste

Brandi1616

Hi all,

I had bc in 2012 was put on tamoxifen for 2 years, chemo put me into menopause so switched to anastrozole. Now my dexascan shows osteoporosis so dr wants to put me on tamoxifen and fosamax for 2 years and then do dexascan again

Im ok with the tamoxifen but worried about the fosamax. Has anyone taken this and what side effects did you have?

Worried about the side effects and the chance of getting them.

Thanks

Brandi